Autism Is Not A Punchline

I was cruising Facebook today and a strong important video from a concerned mother streamed on my screen. Her message broke my heart as I too shared similar feelings regarding the subject of concern. The concern was targeted at TikTok users acting out autism and other disabilities ignoring how disgusting and ignorant and distasteful these videos are. I, too, share her hurt and frustration with the lack of empathy people show towards disabilities. My son is special needs and his disability is not a punchline or humorous.

I can’t fathom why people think making fun of disabilities is entertaining. Possibly they think that they are being comedic but in truth…their actions are damaging to a community of warriors fighting battles unimaginable. Making fun of disabilities is a low act of ignorance and it in dignifies the human beings who struggle every day with bodies that fight themselves. The horror of watching someone fake a meltdown thinking its funny should place themselves in what a true meltdown is. To the ignorant girls and boys making fun of stimming or echolalia I implore them to sit in a classroom and be stared at as they are an alien. To the disheartening video creators who think this kind of bullying is appropriate, well, simply its part of the problem.

Disability is not a mockery it’s an everyday battle for the people facing them. It’s a battle for the advocates to get rights for the human being basic rights. Rights that should be given as equal chances of “normal people”. These videos take away the rights of disabled. Other people had to fight for my sons right to attend school and not be institutionalized. People, good people fought for his right to proper medical care and specialist to help him. One video or more demoralizes the battles fought by good people. No matter how far people get to have disabilities recognized others create a monster of destruction to tear down basic rights and understandings. These videos are a reminder of why our world is behind in human compassion and understanding.

I’m disgusted, angry, and at a loss that human beings would treat one another like this. I have a dark sense of humour but this is not funny. It’s not something to make light of and honestly I don’t understand why people would think to make something like this in the first place. I’ve held my son with pain in his heart because other children told him to kill himself because he was different. I’ve watched my son have meltdowns that are so scary for him. I’m not religious but I prayed for safety and love for him. Watching his body and mind battle the strong spirit within him is devastating. I’ve had to fight teachers for him to understand the brilliance in my sons mind instead of them only seeing a disability. I love my son more than anything in the world so to see people take away and destroy people like him without knowing the damage it causes is disgusting. Its enough when someone’s body hurts them it’s another when people ignorantly add to the trauma of hidden battles. My sons autism is not a punchline.

Written by Ali Johnson

Dear Juvenile Arthritis… I Really Hate you.

My son enjoying jumping in puddles on a good day

Today was nerve-racking as we had to make a call to my sons rheumatologist. A few days ago my son was awoken at night because he was really sick. Juvenile arthritis reared its ugly head back into our lives, it never really leaves but it likes chaos at my sons expense. I hate arthritis because no child or person deserves such an ugly disease.

I have talked about arthritis in previous blog post but I can never truly get the words out on how much I hate watching this disease hurt my nine-year-old child in vicious ways. When I envision arthritis in my head it would only be described as a glob of goo with malicious smiles smearing across its face. Everything about this disease is horrifying because as a parent, the feeling of not being able to ease their pain is heartbreaking. Telling your child they cannot do certain things because this disease takes away from it is gut wrenching. Watching your child not being able to walk for more than ten minutes, or watching them be unable to do things regular children can do is indescribable.

With each appointment, each version of medication not working, each symptom that can change any day is unfair to the child that lives with it. I’m angry with this disease so angry that sometimes it breaks me as a parent to my brave warrior. The pain is one thing but holding your child because he is depressed because he feels his body failed him make you as a parent feel like your failing. I’m a mother who has an amazing son and I feel like I cannot protect him from the bad in the world because it is his body attacking him. The immune system which is normally marvellous in the jobs it performs failed at the task of being my sons defender. I’m angry; I created this failing body. I grew this body for nine months and the first day I held him I promised to keep him safe. Failing in that promise is beyond my control, but his body and immune system is failing non the less.

Being scared of what’s next is part of the deal when you have a sick kid. Before every appointment even though not religious: I pray for good news. Especially during this difficult time of being in a pandemic. I remember the first time we got our diagnosis I promised my son I would be there for every appointment, so he won’t be scared. Praying and setting mental pleas to the universe it went unheard. I cannot be there for my sons injections. His stepdad will have to take him and I will keep pleading with the universe for him to safe. This disease is scary for everyone, yet somehow my superhero of a son finds a way to stay beautiful.

Three nights ago I was holding him while he threw up and had a bad case of diarrhea. Last week he was in so much pain from walking half a block to the mail box. He said to me last night I hate my body mom it’s not nice to me. Followed with why does my body hate me because I want to love it but it’s hard. I wish there was a magic wand I could wave to take it all away from him. Instead, I will hold him longer and try to be there because he needs me to be strong for him.

2019 Halloween he struggled to walk more than a block. We had to pull him in a wagon because he was not going to miss trick or treating. Halloween is his favourite day.

I will say one thing that I admire out of this whole nasty disease is the children who live with it are so brave and fearless. They are true superheros in the face of adversity. My son and other children living with this disease are stronger than words can describe. I admire his courage and faith that he will kick this diseases butt one day at a time. Even though this disease is taking the piss out of our lives right now I know in my heart my son is the strongest little man and I can wish to be half as brave as he is.

One month after intramuscular injections. He walked Princess Macy to the vet.

Written by Ali Johnson

I asked permission before adding this photo. This was at sick kids before going in for his last procedure. He was telling jokes to the nurses because laughter is the best medicine.

Am I enough? Motherly thoughts.

Tonight I had enough with my children I just wanted them to go to bed. Our life has become somewhat abnormal due to home isolation. Time schedules are basic. In the past, everything was routine down to the minute. Unfortunately right now that has not been able to happen so my children and I are going off loose times. What that has done to my ADHD and my sons autism is allowing us to learn how to handle uncertainty. Especially when it comes to school work. My oldest and I are bulls in the China shop so to speak when it comes to sitting down and focusing on the tasks assigned.

It didn’t hit me until I got the email from my child’s school we are going to be home for a while. I have been alright mentally up to this point but upon reading the letter I had a slight panic attack. I’m not fully sure I’m cut out for this. My husband is working away for four days a week. It is my job to be the main parent, teacher, chef, referee, and many other tasks I had forgotten about because I went to work. Not to long ago I wanted to escape desperately from being a stay at home parent. The panic stems from asking myself constantly am I enough for my kids?

Today was bad the t.v. was on too much, my children had a minimal lunch, I was on my phone to mentally escape and I craved to be alone for just five minutes. At the end of the day we missed bath time and this is part of being a parent. Bathing your kids should be essential, and yet I was too exhausted to give bath tonight. I lacked the focus to play bubble beard, shoot the hose, race the cars and whatever nightly bath games ensue. Last night I forgot to brush their teeth. I am the mom who has caved to forgetting hygiene due to exhaustion.

Supper time has become our spectacle of amusement. Some moms post on social media they are taking this time for table etiquette. I sit at the table and hope my boys can be civil enough to not kill one another. Dinner time is either eww I don’t like inserted food here” or me trying to convince the toddler to sit down long enough to scarf some food without choking. My main goal is keep them alive. I feel guilty because other mothers are posting gourmet meals for their kids. Feeling like the poop smear who fed her kids Kraft Dinner and Salad is not what I wanted for my kids to eat. Last week I prayed I could find the food they would eat while the grocery store stood vacant. It’s a catch 22 feed your kids whole foods with non GMO vegan bullshit or make sure they are fed. Guess which option I’m choosing?

Arts and std called crafts. I have been trying to do crafts every single day with my kids. I plan them out carefully and prep the equipment. If all goes well we have a new project to work on for twenty minutes top. Once all the jazz of glittery gluey hell are over for my children I’m the one who cleans up. Stripping the toddler of his newly designed clothes: yelling please don’t touch that: having my oldest try his best wipe down: it’s ridiculous. The arts and crafts box has become a mess. I organized it last Tuesday only to have it look like a hoarders’ paradise just what I ordered. I purged my house before spring and somehow we have collected more junk being more inside than out. Marie Kondo would be ashamed!

All of that wrapped into a big ball I feel I am not enough for my children. If you asked them how was your day my oldest would tell you his mom started teaching him art. The two-year-old would proudly show the names of shapes he learned from watching Blippi. My oldest would say pizza and movie day are his jam. My two-year old would dance because his mom has taught him some groovy moves. I’m sure if the toddler could fully talk he would tell you all about the massive bubble beards we do make together and that mom made him a squirt gun to shoot the bath monsters. My nine-year old would say he has become the master prodigy player and has achieved new reading levels. Contrast to what I think I am as a mother, my children will tell you otherwise. Rewinding from my text above I am doing what I can do.

I am enough for them.

Written by Ali Johnson

Universal Time Out

I think Covid-19 was earths version of a mother putting her child in time out. In my life it has been a heavy time out to rethink my life plan and how I can live better. For others, I think it the Universes way of saying I’ve had enough crap now go to your room and stop being a dick.

Covid-19 in itself is terrible and scary to deal with. I realized people on the planet have not taken the earth or the economy series and that we are failing to act in an emergency. Seeing how others handled panic and how fast the economy came down reminds me how feeble people truly are. I also seen a side of people that I’m ashamed of. Selfishness of human nature is unacceptable. Facing disaster people should put aside differences and do the right thing. Care for one another, support one another, understand one another, if we cannot do this as a whole society then we are in for a nasty future. Something has to change, and it has to change fast.

Our mother earth needed to breathe and justly, so I think people need to stop being the rude aunt at holidays. Everything in the world has become disposable, fast paced, throw away with no consideration for anything else. We as a society have become disposable. Our Earth is surrounded in toxic thought and production. We have become quality not quality. Humans are the company who produces greed and bad coworkers. I honestly think the world needed space to heal the wounds that we have left. A lesson in reminding people that we are privileged to live on the fragile earth beneath our feet. We are gifted with intelligence to be better to create a better life. Instead, we used our intelligence to be destructive to the gracious host.

Wordly quarantines can give time for reflection on our actions towards others and slow down. I keep hearing when things go back to normal. Can we really just go back to normal and ignore the big message being displayed right before our eyes? There is a bigger picture being held up it is saying change the thought and frequency we are going at. The smallest lesson being whispered to us is stand united and change. We need to become a society that is better than the past. It’s almost as if we are headed to repeat the past but with stronger weapons of destruction. It’s not the atomic bomb it’s the destruction of society and the fragility of human ego. In the words of Dr Zuess, The Lorax, “Unless someone like you cares an awful lot, nothing is going to get better. It’s not”. This too applies to everyone coming together and caring about the world we so happily destroy.

The biggest factors in our destruction right now is greed, power, and indifference. A calling for peace and unity could change the narrative of the world. Calling for a change of government, a change of life, and a change of treatment for a collective whole would allow the world to advance in a way of the future. Looking at the novel perspective we are headed to the future depicted in the story “Harrison Bergeron, by Kurt Vonnegut.” We will have no freedoms, no will, and no place to call our home because we have chosen to destroy it with petty human nature.

It’s time to listen and it’s time to change. Take time to breathe with universe and listen to the fine tune of what the future should be. Be one with our Mother Earth and wake up the unity we are capable of. Take the breath and take the trust fall that we need to grow and give Mother Earth her space.

Written by Ali Johnson

Unless someone like you cares a whole awful lot, nothing … | Flickr
Dr Zuess
The Lorax